Creating awareness for deep vein thrombosis (DVT). #fightDVT

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I’ve taken a little bit of a hiatus from blogging and sharing my experiences with deep vein thrombosis (DVT) and pulmonary embolisms (PEs), but I’m back! I’m not training as frequently as I did for the marathon, but I finished my tenth half marathon (eighth post-DVT) yesterday in Central Park — the MORE/FITNESS/SHAPE Women’s Half-Marathon! 🙂 It was such a beautiful day and I’m always inspired when I’m surrounded by so many women who have trained and worked so hard.

I was also lucky to have had the opportunity to share my DVT and running story with Rewire Me — an online community focusing on health and wellness.

Exhausted and happy — two years after my DVT (deep vein thrombosis), I finished my first marathon, the TCS NYC Marathon! 🙂

I did it. I successfully ran my first marathon.They say the marathon is your reward — that after the months of hard work and hours of running, the first time you run 26.2 miles is your reward to yourself. Two years ago, the idea that 26.2 miles could ever be a reward seemed crazy. But they were right.

The race itself was one day, but it was a two year journey that got me here — a deep vein thrombosis (DVT or blood clots) and bilateral pulmonary embolism (PEs) diagnosis that left me fighting for life and limb, a doctor’s devastating conclusion that running would no longer be in my future, and a pure stubbornness that left me with a simple challenge: If they say I can’ t run, I’ll just have to run the marathon.

The journey was not physically or mentally an easy one (see my story here). Physically, I struggled to even walk more than a block or two. Mentally, I’d never run more than a half marathon in good health, and the idea of doubling that distance in poor health seemed impossible. But I pushed forward anyway.

Over weeks of training, patience (or more likely, impatience and a desire to just keep going despite the pain) paid off. My body stepped up to the challenge. I created a web of new collateral veins in my leg to provide better blood flow out of my leg, and I was able to run further and in less pain. By 2013, I was well on my way to completing the New York Road Runners 9+1 program for guaranteed admission into the TCS NYC Marathon and I knew I had no choice but to go all the way.

But telling all your friends and family (and even repeatedly telling yourself!) that you’re going to run the marathon is different from truly and internally knowing you will successfully run the marathon.

This is what made my marathon journey truly special. My 18-week training plan was about more than becoming physically ready for 26.2 miles, but also about becoming mentally convinced I was ready.

Deep down when you sign up for your first marathon, I think everyone has a little fear that maybe it’s impossible. We’ve all been repeatedly told that it’s possible — that with discipline and training, pretty much anyone can get through it. But I think that even if you intellectually know this, it’s not the same as walking into marathon day and knowing you can.

When we first started the 18-week training plan, November 2 seemed like an eternity away. We slogged through the training runs, and each week’s long run seemed more daunting than the previous. But at a certain point in the training (I think when we hit mile 18), I realized I could do this. The long runs were still time consuming, but I knew I could get through them.

This breakthrough makes all the difference.

The certainty and confidence of “Yes, I can run this” is what makes marathon day so rewarding and so much fun.

Hard earned — the 2014 TCS NYC Marathon medal.

There’s absolutely nothing like the NYC Marathon — the crowds have the energy of the entire city, the course is beautiful, and you can feel your hard work paying off. No doubt, the marathon certainly challenged me — the winds were out of control, I drank too much Gatorade and felt nauseous for parts of it, the “wall” at mile 19.5 hit me hard in the Bronx just as the crowds thinned, but not once did I think I could not do this.

When I finally crossed the finish line in Central Park, depleted of all my adrenaline and endorphins, covered in salt from evaporated sweat, and in more pain than I had planned for, I smiled and cried. It took 24 hours for the shock to wear off, but I now have the eternal satisfaction of knowing, “Yes I can.”

Thank you everyone for all your love and support–this journey would not have been possible without you!

I’m also including a more casual recap of the marathon. 🙂

After two years of build up, it was hard to believe marathon Sunday had actually arrived. We took Friday off to go to the marathon expo so we wouldn’t be in a rush and mentally prepared for an amazing weekend. The crowds were amazing and the energy was incredible–we were surrounded by people of all shapes, sizes, colors and ages, and all of us were here to run.

Get Your New York On at the NYC Marathon Expo.

Race to the finish of the marathon!

A huge part of this race was raising money to help support STOP THE CLOT for the National Blood Clot Alliance — I am so lucky to have so much support from so many friends. I carried their names with me every step of my 26.2 mile journey.

So lucky to have so many friends donate to the National Blood Clot Alliance! #StopTheClot

Festive marathon nails. 🙂

Getting to the start of the race was an adventure in and of itself — we woke up early to catch the ferry to Staten Island, where rows of buses waited for arrival. Once there, we were shuttled to the start of the race. NYRR had set up a home base for the runners with food, toilets and lots of cheer. After that it was a waiting game, but luckily we didn’t have to wait more than 30 minutes in the cold.

Bundled up on the Staten Island Ferry.

Pre-marathon excitement and jitters.

BANG! The gun went off for each wave of the race, and when we finally started it felt surreal. With New York, New York at top volume, I could not have imagined a better start.

Ready to go in our corral.

New York, New York, and ready to run!

The Verrazano Bridge. Wow. The weather was unfortunately one of the windiest in marathon history. So windy that the wheelchair competition had to start after the bridge, and even the elite runners were significantly slower than in previous races. We started the race at a slower pace, but the winds were so strong that we kept running into each other and other runners. It was an almost comical bonding experience as all our fellow marathoners struggled to just keep moving in a straight line.

So happy to see everyone in Brooklyn.

Nothing but joy.

Meanwhile…my friends and family were rallying in Brooklyn. The crowds were probably my favorite part of the entire experience, and the cheering fans and signs give you the energy and motivation to keep going. When I finally made it to Brooklyn, I could not have been happier. I was feeling strong and having so much fun running through the city. Seeing my friends and family was perfect.

So much support.

Even more Stop the Clot love.

The race took us through more of Brooklyn and then a tiny portion of Queens before we ran over the bridge into Manhattan. After all of the crowds, it was a strangely peaceful stretch, with nothing more than the steady sound of running feet to keep you going.

Quiet into Manhattan.

Going up First Avenue with the crowds screaming.

Once in Manhattan, the crowds on First Avenue were roaring. It was hard not to feel like a celebrity, especially because I had name written across my shirt. Also I had some of the best signs in the race. 🙂

Don’t Fall. Daft Girl. Don’t Poop.

Running everywhere.

I was about 19.5 miles through the race when I finally hit The Wall. This is the point in the race where the crowds have thinned, and you are making your way further and further from the finish line (leaving Manhattan to go to up to the Bronx). With more than 10K left, an hour plus of running felt like an eternity. I knew that I would finish, but I also wasn’t sure how much of a toll it would take to get me there. When I finally made it to Central Park, I knew I was in the final stretch and just had to keep pushing.

The final stretch in Central Park.

The Wall is real.

The last few miles were a struggle and it was hard to give my family more than a thumb’s up when I ran by. When I finally crossed the finished line I was filled with both enormous pride and enormous pain. I somehow hadn’t realized how cold it was until I crossed the finish line!

To most people, that probably seems crazy. I ran two half marathons before my deep vein thrombosis (DVT or blood clots), and have run five more half marathons and dozens of shorter races since my DVT. I’ve been training for the NYC Marathon all summer and I have been consistently increasing my mileage every week so that I’ll be able to achieve 26.2 miles in less than seven weeks.

But I never considered myself a runner.

I’ve always made sure to emphasize to friends and family that I’m not really a runner.

I go running, but I’m not really a runner.I’m really slow.My leg hurts when I run, I’m not a runner.I’m only running to help with recovery.
Running hurts, it’s not fun for me.

Excuses.

I think I was worried that if I told people I was a runner, they would assume I was really good or really fast (I’m not, and that’s OK). I used my DVT as a crutch. And while running has allowed me to overcome my DVT and exceed doctor expecations, it’s also become an excuse. DVT gave me a bad leg. DVT weighed me down. DVT meant I was still slower than I was before.

Runner’s high after 18 miles.

But this Sunday, I got over that.

This Sunday, I ran 18 miles and I felt really good!

New York Road Runners sponsored an 18-Mile Marathon Tune-Up in Central Park this past weekend. I’d been nervous all week. I had trouble sleeping and a massive stomach ache. My 16-mile run from the week before had been exhausting. It was hot, I was on vacation in Vienna and lost, and I had to walk for parts of it. There was no way I was going to be able to add an extra two miles.

Up until this point, so much of running had been about the destination — about becoming faster than I was pre-DVT, running longer than I had pre-DVT, being better than I was pre-DVT. It was about checking those boxes, and winning.

But this weekend, something finally clicked. I knew I had over three hours of running ahead of me, and I eased into the running. I enjoyed the crowds of fellow New Yorkers who were also training for the marathon. I enjoyed the green in the trees and the crisp cool air. And I enjoyed the actual act of running. I embraced the pain, I embraced the struggle, and I embraced the journey.

It’s been two years since I nearly died in Malaysia. Two years since I couldn’t walk. Two years since I thought I’d never run again. Two years since I didn’t know what was wrong with me, and two years since I wondered if I would see another birthday.

So much can change in two years. I am so happy to be alive, so happy I can run, and so happy I have such wonderful friends and family who have helped me get to where I am today.

As the mileage builds up and the training runs get longer, the marathon is feeling real and achievable. With regular running, I’ve noticed my body is more relaxed during my long runs – I’m not in a rush to finish, and I take each distance one mile at a time, trying to enjoy the finally cooler morning air. I’m not trying to get a specific time, I’m just training my body to embrace the progressively longer distances. Running is such a mental exercise, and more than half the battle is just convincing yourself you can and will do it.

Of course, running is also physical. Deep vein thrombosis (DVT) is also physical. And the most important thing I wear every day so that I can have a clear mind and focus on my running or anything else in my life is a compression stocking.

It’s been nearly two years since I was diagnosed with DVT, but I still wear my compression stocking daily. All day. Every day. I pretty much only take it off to shower and sleep.

What is a compression stocking?

Compression stockings are a special type of stocking/sock to help promote circulation in your legs after a DVT. The stockings are graduated, which means that they start tighter in the ankle and gradually become less tight as they go up the leg. The stockings apply pressure in such a way that your blood is encouraged (squeezed!) to move out of your leg. Compression helps stop the blood from pooling in your leg, which causes much of the post-DVT swelling and pain.

Why is it important to wear one?

Depending on the severity of your DVT, you may be experiencing varying degrees of swelling, pain and residual clotting/scarring in your veins. DVTs can result in significant trauma to your veins. Arteries bring blood (oxygen) to your legs (and other body parts), and veins bring the blood back to the heart and lungs for oxygenation. Because a DVT damages your veins, and not your arteries, your blood is still able to go into your legs and provide them with oxygen.* The problem comes when your body tries to get that blood back out of your leg, via your veins.

When the valves in your legs are damaged after a DVT, the blood can flow backward in the veins and your legs will be left swollen. Compression stockings can help mitigate this effect.

In many cases, people who have experienced a DVT develop something called post-thrombotic syndrome. In a properly functioning leg, your blood moves through your veins through clear clot-free pathways with the help of valves. Valves make sure your blood keeps moving in the right direction. They support the weight of the blood in your veins and keep the blood going forward, instead of leaking backward. Valves are especially important when working against the force of gravity—in your legs, for example.

After a DVT, your veins may be completely or partially blocked off (this may or may not be permanent, depending on the individual)—this makes it difficult for the blood to go through the veins (think of it like a traffic jam for your blood) and out of your leg. Additionally, the DVT causes inflammation of the valves and can permanently damage them. This means that even if your veins become completely clear again, if your valves are damaged, you may experience pain and swelling in your leg.

*If your leg or foot is turning blue/black, you need to see a doctor immediately. This could mean that your DVT is so severe that it is preventing oxygen from getting to your extremities. When I had my DVT (a severe form called phlegmasia cerulea dolens) my foot was turning blue because it was not getting enough oxygen. I’m very lucky I didn’t lose my leg.

So what can you do?

Elevate your leg. After a long day on your feet (or even sitting in a chair for me), give your legs a break and let gravity help get all that excess blood out of your legs.

Create new veins! It may seem totally crazy, but your body is a wonderful machine and can create new veins (called collaterals). I create new veins by running regularly and I am still seeing regular improvement in my leg. I hope that one day I won’t even feel a difference between the two legs.

Wear compression stockings. By wearing compression stockings you are doing two things – (1) You are helping reduce the swelling and pain you feel today. (2) You are reducing the severity of future post-thrombotic syndrome symptoms. Post-thrombotic syndrome can develop up to two years post-DVT. And because the valves are too small to see, it’s really difficult to tell if and how much your valves have been damaged.

How long should I wear one?

All day. Every day. Seriously.

You should wear them for at least two years after your DVT to make sure you don’t develop post-thrombotic syndrome. After that, if you’re no longer experiencing pain and swelling, and you have doctor permission, there’s no need to continue wearing them.

Take them off to sleep and shower, but you’re doing yourself a favor by wearing them as much as possible. Although they can be difficult to put on, it’s really the easiest thing you can do for yourself to help aid in your recovery. Compression stockings will help with pain and swelling, which will allow you to be more active. The more active you are in daily life, and the more you’re able to exercise, and the more veins your body can create. It’s a happy cycle.

No, they’re not incredibly comfortable. Yes, they’re a pain to put on. And yes, they’re unbelievably hot and suffocating when it’s humid and in the middle of summer. But they will MAKE YOU BETTER.

But there are so many! What do I wear?

Take a deep breath. There are a lot of options, but it’s also important you get the right stocking for you.

Length. Stockings come in different lengths: (1) knee high, (2) thigh high, and (3) pantyhose (both legs). Definitely consult your doctor first to figure out which length is best for you. If your DVT was small and in your calf only, you might only need knee high. Because my DVT was so severe, I need to wear a stocking that goes all the way to the top of my thigh. Perhaps if you had DVT in both legs, you would be best suited to wear pantyhose (both legs).

Compression. Compression stockings won’t work unless they’re tight on your leg. They should be difficult to put on and feel extremely tight. Before you purchase your first compression stockings, you should consult a doctor to make sure you are properly fitted. The stockings should have a compression pressure of 35 mmHG.

Colors. Compression stockings are offered in a variety of colors ranging from white, different shades of nude, brown and black. Although they will not match your skin color exactly, you can get pretty close.

Open and Closed Toe. This is more a matter of preference and comfort level. I have a variety of both, depending on the situation (more below).

Brand. Again, this is personal preference. When you first order compression stockings, you should purchase from several different brands. Some will fit better, be more comfortable, stand up to wear and tear longer, or match your skin tone better.

*Compression stockings are also not the same thing as the white anti-embolism stockings you will be given in the hospital. I made this mistake for a month—these stocks are given to patients and have light compression to help with blood flow to help prevent blood clots, but are not what you will need to help get over your DVT.

How often should I replace them?

Every 3-6 months. Over time, the stockings lose their elasticity and ability to compress. It’s important to replace them, or there’s no point in wearing them at all. I notice that my leg tends to ache more when the stockings start to get old.

I realize this can potentially add up to be a lot of money, but look into whether your insurance will cover them. Many do.

For those of you wearing thigh high compression stockings, you can also recycle them for your good leg (see below).

But they’re so ugly!

Yes and no. When I was first told I would need to wear compression stockings for a minimum of TWO YEARS, possibly for the rest of my life, I was pretty upset. I was convinced I would look completely ridiculous and everyone would stare at me and wonder who the weird girl with the one stocking was. As a twenty-something year old girl in New York City, it’s hard not to be a little vain and self-conscious sometimes.

But I wanted to get better, and at the end of the day my health was and is more important than any feelings of embarrassment I might have.

And you know what?

It doesn’t matter. No one cares. In fact, most people don’t even notice. And even if they do notice, they still don’t care. It’s just a sock.

But I do have some practical advice for making stockings work for you:

Rocking the single compression stocking look. Most people can’t even tell I’m wearing one.

Daily life: Most of the time, I wear a simple nude compression stocking. I prefer the open toe stocking, and pull it up over my ankle so that my leg is covered, but most of my foot is exposed. I can wear sandals and flip flops, get a manicure, walk around barefoot, all with no problem because my feet are out in the open.

Winter: If I’m wearing a skirt or a dress in the winter, I will typically wear closed toe black compression stockings. Although they are thicker and tighter than stockings you might buy for cheap at any store, no one else can tell by looking at them. I did find that it was difficult to find a “regular” stocking that would match the exact color for my good/right leg, and so I’ve started recycling my old stockings. Because compression socks are only good for 3-6 months, I will use the looser, older black closed toe stockings for my right leg.

Adding some color: Unfortunately there’s not a whole lot of fun color variety in the world of compression stockings. However, if you wear an open-toe nude stocking, your regular fun and colorful tights will go on top and no one will know the better.

Pants and jeans: I’ll wear open toe compression stockings with pants so that if I take my shoes or regular socks off, you’ll see a little bit of compression stocking sticking out from the bottom of my jeans, but nothing more.

Working out: When I work out and run, my feet like room to breathe. Closed toe compression stockings can get a little tight and make my feet uncomfortable, so I always wear open toe stockings when I work out.

Swimming: This is probably when I feel the most self-conscious. I wear the nude compression stocking and it’s definitely much more visible than normal because the top of the stock is visible. I’ll either wear shorts to cover up, or just rock the sock. I’m with my friends or family, and they don’t care.

Compression stocking underneath my running pants–with pants, shoes and socks on, you can’t even tell which leg has the stocking! (my left leg, right in this photo)

There’s no reason not to wear your compression stocking. Good for every occasion. 🙂

Wearing heels and going out for a night of dancing shouldn’t stop you from wearing your compression stockings.

At the end of the day—my drawers are filled with two types of socks (1) thigh high nude open toe and (2) thigh high black closed toe.

Where can I buy them?

You can buy your stockings from a variety of places, including online and in the store. The major compression stocking companies are:

I don’t endorse any brand or site over another, but I get my socks at compressionsale.com because I find they are the cheapest.

I’m still on the lookout for other sites and brands, so I’m happy to take more recommendations. I’m also interested in trying knee high compression running socks while training (over my regular thigh high), but I’m still looking into that as well.

Final thoughts.

First, you can get sunburnt through them. The stocking provides some sun protection, but I definitely was badly burned on my last beach vacation because I incorrectly thought I was safe.

And lastly, this is one of the easiest ways you can protect yourself and get better! Rock the one legged sock all the time and you can live a happier and healthier life. 🙂

Although doctors initially told me I would never be able to run again, I have since run five half marathons and numerous other races. I run regularly, and I’m convinced running saves my life daily.

DVT left the veins in my left leg a scarred and clotted mess. But running has allowed my body to heal and generate new veins (collateral veins) to help meet the demands I put on it with an active lifestyle.

I am still slower than I was two years ago, but I am determined to be better than I was before.

This is where the marathon comes in.

A marathon was something I thought impossible two years ago when I was healthy. A marathon was impossible a year and a half ago when I was in the hospital. A marathon was still impossible when I signed up. A marathon is still impossible today. But by training for and running the NYC Marathon, I want to prove to myself (and hopefully to you) that anything is possible.

I also want to use my first marathon as an opportunity to spread awareness. By sharing my story, I have already been able to warn my friends and family about the signs, symptoms and dangers of a blood clot, but I want to take this further, and I’m hoping you’ll help.

More than one person dies every six minutes from a pulmonary embolism.

That’s 274 people dying each day from a blood clot.

This is more than HIV, breast cancer and motor vehicle crashes COMBINED.

These numbers are completely crazy and should not be this high. How could these numbers be reduced? Awareness. Awareness. Awareness. If more people knew how to (1) recognize the signs and symptoms of a DVT before it was too late, and (2) take simple precautions to avoid a DVT, thousands of lives could be saved each year.

The National Blood Clot Alliance is one of the largest organizations working to help spread awareness of DVT and provide assistance to those who have experienced a DVT. Although its focus has in the past been on patient advocacy, it is refocusing its efforts on public awareness in 2015 and in the future.

TEAM STOP THE CLOT for the 2014 TCS New York City Marathon is raising money for the National Blood Clot Alliance to help support this goal. Each team member is running 26.2 miles to help raise funds and spread the word to STOP THE CLOT.

My hope is that one day DVT and PE will be as well-known as breast cancer, skin cancer, or AIDS. It is through the efforts of many hard-working volunteers as well as generous funding that these have become everyday words.

It would mean a great deal to me if you could help achieve this goal.

Because I am not running the NYC Marathon on a charity bib (I qualified by running 9 races + 1 volunteering job last year), any money I raise will be used exclusively to STOP THE CLOT. All funds will create awareness for the general public and hopefully prevent more stories like mine from occurring.

I also promise that if you donate to my campaign, I will RUN WITH YOUR NAME on my shirt during the race–this way, we will be running together. 🙂 No donation is too small, and any amount will help STOP THE CLOT.

One of the things that I find has made training for the NYC Marathon more manageable is having a good team. It’s more than just having loving friends and family encouraging you every step of the way (although of course this too is crucial). It means having someone by your side who is also having the same experiences.

Our NYC Marathon training schedule!

Lucky for me, I am not training for my marathon solo. I have a very good friend running the same training program, and she struggles with the same runs each week. We keep each other accountable, and I know that if she’s tackling the training runs with her equally hectic work schedule and personal life, then I can do it as well. We can vent to each other about how we’re sore, or about how that week’s run was much harder than the rest…

…in short, it’s that feeling of community and shared experience that make the entire experience more enjoyable. I know that I’m not alone. And I know that together, we can both finish this thing.

Similarly, one of the most important things I’ve realized through my deep vein thrombosis (DVT or blood clots) recovery is the importance of community. DVT and pulmonary embolisms (PEs or blood clots that have broken off and gone into the lungs) are actually fairly common–one person dies every six minutes from blood clots, which adds up to more deaths in America than HIV, breast cancer, and car crashes combined!

But because there are so many of us, I’m slowly realizing there are actually a number of very helpful online communities to discuss treatment options, medications, fears, recurrences of blood clots, and even running tips.

When I was first hospitalized in Malaysia and Tokyo, I felt so alone. I had heard of DVT, but I honestly knew very little. I was overwhelmed and in a foreign country, and none of my friends had ever experienced a blood clot. It was all new, and I didn’t know my options or understand what was happening. And while I spent countless hours reading different medical journals or articles explaining the science behind what was happening to my body, I wish now that I’d spent more time interacting with other people who had experienced something similar.

Reading about other people’s experiences:

(1) educates me.

Although doctors, news, and medical journals/articles have been able to explain a great deal of what is and has happened to me, it’s been incredibly helpful to hear from others who have many more years of experience. Science is continually progressing, and I’m hopeful that treatment options will continue to expand and be perfected over time.

But there’s a lot science doesn’t know. I’ve learned there are likely more genetic clotting factors than have currently been discovered. I’ve learned that the medications that work for me now may not work in the future. I’ve learned that exercise/running certainly helps in recovery, but it’s unclear how much we can push our bodies and unclear just how much this can affect post-thrombotic syndrome (chronic pain and swelling) long-term. I’ve learned that it’s unclear why some people get post-thrombotic syndrome and others don’t.

And while a community of individual experiences cannot itself provide definitive answers, it can help broaden your general awareness of potential outcomes. Knowledge gives you the power to better manage your condition.

(2) inspires me.

More importantly, I’m inspired and constantly amazed by everyone. There were so many times I struggled–struggled to stand, struggled to walk, struggled to run. But for every struggle I felt and every bit of frustration I experienced, there are a dozen more success stories. Again, I wish I had been better aware of these communities a year ago, but even now–almost two years out–I feel motivated and inspired to see my fellow Clot Busters racing triathlons, running marathons, and doing whatever else it was they were doing before they got sick.

I encourage anyone that’s struggling to do the same. It’s so easy to feel down on yourself when you can’t do what you were once able to do, but talking to others and reading success stories made me realize that if they could do it, I could too. Very little cannot be accomplished from sheer determination and continued efforts.

Here are a few of my favorite communities–

Facebook: Running after a Pulmonary EmbolismA great community of post-PE/DVT runners who post their success stories, questions, advice and latest news. Everyone is incredibly friendly and quite responsive. This is an amazing and inspiring group of people that just won’t quit and won’t take no for an answer!

CLOT BUSTERRoland Varga maintains an Athlete of the Month post, where he shares that individual’s DVT/PE story, their recovery, their advice, and their current progress/training goals. There are over six years of monthly athletes shared on this page, and there are sure to be a few that resonate with your experiences and will motivate you to keep going. He’s been kind enough to feature me for August!

Daily Strength: Deep Vein Thrombosis & Pulmonary Embolism Support GroupAnother community of clotters that offers support and comfort for those who are experiencing or have experienced a DVT/PE.

At the end of the day, it doesn’t really matter where you go to find your community. What’s important is realizing that you are not alone, and that your goal of getting back to — no, exceeding — where you used to be physically is possible!